How to Participate
The Undiagnosed Diseases Network (UDN) is a research study that is funded by the National Institutes of Health. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.
Through this study, we hope to both help individual patients and families and contribute to the understanding of how the human body works.
How To Submit Your Case
If you decide to submit your case to participate in this study, you will need to answer a series of brief questions through our case submission portal, the UDN Gateway, related to the following:
- Contact information
- Demographic information
- Health care provider information (name, address, phone, fax, email)
- Brief medical history questions
- Previous evaluations
- Travel limitations
Study Recommendation Letter (required)
A study recommendation letter from a health care provider (for example, specialist, primary care physician, nurse practitioner) is required to submit your case to the UDN. The letter must be written in English, signed, and on letterhead. Neither you nor a relative may write the letter. You will upload this letter to the online case submission portal. The study recommendation letter must include:
- A summary of the participant’s medical problems
- Date when symptoms were first noticed
- Previous diagnoses
- History of evaluations and testing
- History of treatments and medications
- Current medications
- Family history
- Health care provider’s diagnostic impressions
- Prenatal and birth history
We have prepared a sheet of information for you to share with your provider (PDF), as well as a set of example study recommendation letters (PDF).
Medical Records (optional)
You will be asked to upload all medical records you have to the online case submission portal. The medical records must be in English. We will request all the records from the start of the participant’s symptoms, including:
- Specialist consultant notes (such as cardiologist, neurologist, geneticist)
- Lab results
- Genetic testing reports
- Biopsy reports
- Radiology reports
- Imaging reports (MRI, ultrasound, X-rays)
- Prenatal and newborn records, for pediatric participants
- Growth curves, for pediatric participants
If you do not have some or all of your medical records now, you may submit your case without them. If we need any additional records, we will contact you after your case is submitted to request them. If you would like assistance with uploading your medical records, please contact us at the UDN Helpdesk.
Patient Narrative and Photos (optional)
Please provide us with a detailed patient narrative telling us your story from your perspective. We will have received the letter from your referring provider, but the narrative may help the UDN understand your medical history directly from you. Sometimes photos and/or videos help the UDN team better understand the symptoms the participant is experiencing. If you would like to provide a narrative and/or photo/video, please upload it to the online case submission portal.
Medical Record Review Process
After a case is submitted, it is sent to one of the UDN clinical sites to review. The UDN clinical sites typically contact participants within one month of case submission and may request additional information, such as medical records.
After all the requested information is received by a UDN clinical site, it typically takes 6-8 weeks for the network to decide what evaluation type your case will be assigned to. The UDN will contact you and your provider when the review is complete.
Start Case Submission
Contact Information
Hours: Monday–Friday, 9am – 5pm ET
Email: UDN@hms.harvard.edu
Phone: 1-844-746-4836 (1 844 Ring UDN)